Share Your Story

Facing the future when you are living with a chronic disease like Parkinsonís disease (PD) is challenging for anyone. If you are like me and you ďlive alone with PD,Ē with no care partner or spouse to offer support, you may find the challenges especially intense. It is easy to become overwhelmed or long, in vain, for life before Parkinsonís disease.

Since I was diagnosed 14 years ago, despite supportive friends and family scattered across the country, daily life with PD has very much been an experience I go through alone. The biggest challenge for me has been making sure I do not become isolated. I have done this by building a suppor≠tive network of friends and family.

I have also experienced how living alone can complicate the many issues of daily living that PD presents. What do you do when you can no longer clean the house yourself... when you cannot get out of bed and there is no partnerís arm to help you...when your yard is filled with weeds and you donít have the energy to pull them up?

Then there is the problem of living without a second income. When I was employed, I managed the employer-sponsored long-term disability insurance plan from which I now receive benefits. As the recipient of the distraught calls from declined claimants, I used to worry that I would become one of them. When I resigned from my job at age 52, I worried about how I would pay my bills and struggled with losing my professional identity.

In facing these challenges, the future has seemed daunting, but I have found new resources in unexpected places. For the first few years after my diagnosis, I lived life much as before ó going to work and my neurology appointments ó but did not interact with other people with PD. As my work became increasingly difficult, I found that I needed the support of my fellow travelers on the Parkinsonís journey. In my search for a community, I found an incredible network of friends with PD through my support group as well as BrainTalk, an online message board and the Parkinson Pipe≠line Project, a group of advocates whose goal is to provide the patient perspective in the treatment development process.

When I felt I needed more than peer support because of depression (a common symptom of PD), I found it with a wonderful psychologist.

For practical matters, I have found that help is available. For instance, when I had trouble finding transportation, my local Office of Aging introduced me to a woman who has given me rides to places like the airport, at no cost to me.

Frankly, PD limited my career, but it also opened the door to new opportunities. I now work as an advocate for Parkinsonís research, through my work with PDF and the Parkinsonís Action Network (PAN). I have learned that I can use certain skills, such as my knowledge of website construction, to push our cause forward. I also use my leadership skills to head up a local support group.

So, while I sometimes look back to my old life with envy, I now embrace my future as valued friend and PD advocate. I do so using perseverance and a positive attitude.

I urge those of you who may live without a spouse, partner or close family nearby to see this fork in the road called PD as I have, as a new journey. While challenging, it can produce an entirely new and, in many ways, a deeply rewarding life. Henry Wadsworth Longfellow once said, ďLook not mournfully into the past. It comes not back again. Wisely improve the present. It is thine. Go forth to meet the shadowy future, without fear.Ē I encourage you to this advice to heart by getting involved in your community. Be active!

Carolyn Stephenson is a person living with Parkinson's. She is the webmaster for the Parkinson Pipeline Project and a Tennessee support group and leader of her support group in Gettysburg, PA. She is also a Pennsylvania Congressional Coordinator for the Parkinsonís Action Network (PAN) and was a planning committee member for PDFís 2008 Clinical Research Learning Institute.